PGP / SPD My story:

...but none that were desired. We have got a diagnosis that fits as well. I have been diagnosed with Hypermobility Syndrome. Sounds scary but all it means is over mobile joints. I have had this since a child and I never thought anything of it, didn't know it was a Syndrome and definately did not know it can and will cause the pain I am suffering with, it has triggered SPD and unlike SPD which comes and goes for the rest of your life, Hypermobility Syndrome has no known cure and is a permanent life long disability. Hard to digest right now when this morning at 4am my husband was rushed to hospital with chest pains and crushing sensations which thankfully turned out not to be cardiac but is caused by stress. We have NO help, we have my parents but thats all we really have right now. Feel abandoned by family, and some friends. Feel isolated, alone, insecure, gutted, desperate and still we are trying to fight. GP is doing all he can and he is doing well but right now we ...

Hopeful finally...to be able to have a shower in our own home and use a real toilet in its own private room!!! I cannot wait! It's gonna be like Christmas or winning the lottery!!! <3 YES!! I Having got myself a caseworker from an organisation called Shelter, I am now feeling hopeful: summary of conversation: Apparantly due to my deprivation of much needed services, i.e. toilet/bathroom, and with being registered as a disability, and suffering for 7 months+, etc... I should have been awarded a stairlift regardless of any letter from any consultant before now. They apparantly need to assess on the needs of the individual and how high the needs are in which a commode is not suitable for use long term and no access to a toilet/bath or shower is not again a long term solution, along with no access to upstairs. I am not going to state anything that is confidential or important to the case but the caseworker will now write to social and myself and I am wai...

...On a positive note I am attempting to create a fully clothed and fun themed Calendar to raise much needed awareness on SPD. SPD sufferers are to be the models, standing proud with their crutches, or sat brave in their wheelchairs, to which I am happy to model with them in my wheelchair too, more info can be found on our facebook support group which the link is available in the links section at the top of this blog. My business is closed but I am still volunteering under my business name as I will be organising the calendar and my business name has always been my project alias, hobby name and has been used for all/any projects I have done for the last 9 years, when I first started under the name. We are looking to support a well known charity that affects most people and to reach an audience who will probably not know much if anything about SPD. We are currently thinking of supporting Cancer Research, as I lost a loved one through Cancer and many people will have too, or atl...

My strength? What strength? I don't have any anymore, just like I am losing faith in society and people . Over the last few weeks I have encountered some offensive and malicious people that are ignorant and seem to gloat over others suffering. Online, higher organisations, staff, moderators of groups to help the planet *This one surprised me lot's* and even in shops and supermarkets. Just as 2 examples and unfortunately not the most offensive and upsetting situations I have found myself in recently which involves disability hatred . I am constantly shocked everytime I come accross more and more disability hatred towards myself, they should be ashamed of themselves, this is a new disability I have and at the end of the day when i was independent and could walk I would never and have never even dreamed of treating the disabled with such disrespect, I even dedicated almost a year to helping Learning Difficulties Disabled Adults and Children and I think everyo...

I have been hiding away and avoidant again for a while but now i need to speak up again... Xmas is over now and we had a nice xmas as we stayed at my parents and they had bought a sofa and a matching sofa bed for their living room just for us!! Can you believe it, changed their furniture just so i would be able to sleep over at xmas. I love them so much! We are still fighting for a stairlift, our son is 6 weeks old 1st january and I am still trying to get my 6 weeks check up. Whats happened about the stairlift? Well, my new consultant originally refused to send social a letter about me as he refuses all his patients since a check from the county council previously bounced therefore its been seriously held up. My SPD's getting much worse and a while ago now i was in hospital with the stomach pains, different to SPD pains and the consultant who saw me on the 10th the one who discharged me without telling me who i was reassigned to on the 10th Dec said that it would subsid...